116 weeks

Dear Sonzee, 

Today it has been 116 weeks since you were here.  Sometimes even though I write you a letter every week it still makes me pause an extra second to see the actual number of how many Mondays it has been.  As I have said at least 100 times before, I can still remember the details of that Monday as if it were to have happened today. I tell myself it is a blessing because maybe one day I won't remember it so well and I won't have any pictures to jog my memory.  There are so many details of your life that have already slipped from the forefront of my mind, I shudder knowing the same can and probably will happen at some point. But for now, 116 Mondays since you last shared my physical space, I am thankful I remember it all.

This last week we spent in Florida.  I laughed being a tourist in a state I spent the majority of my life.  I went to the Everglades for the first time and not just driving through.  We took an airboat and also went on an animal encounter.  I didn't mind the baby alligator, probably because he had his mouth taped shut, but the boa and huge scorpion I could have done without.  The airboat was fun, I loved how much your siblings loved it!  When we started out there was a black and red bird.  I thought of how it could have been you but then kept the thought to myself.  Sometimes I feel insane when I find myself making everything a sign.  I would totally sound like a nutcase if I spoke the words aloud.  

This week was another yizkor service on the last day of Pesach.  I sent savta flowers for the last days in your honor, so they were a pretty red and pink bunch.  I got your oldest sister a grieving book for teens (I know a bit early, but I am sure you've talked to her and I bet you would agree).  She isn't wanting to read it.  I am hoping she is just telling me that and she is reading it without me knowing. I HATE how your siblings keep everything to themselves and then randomly share a "fun fact" that would have been useful to know 2 years ago.

I spent a good portion of my week thinking about you in various ways.  I will probably save the bulk of the thoughts for another day, but we saw so many people and no one asked about you or brought you up.  It was one of those side notes I just stored.  I think I was indifferent to it, but I definitely noticed.  I wonder if they feel awkward about it or if they have already forgotten about you?  It has only been 2 years...is that possible?  Out of sight, out of mind?  Maybe it is better than asking me something dumb, that would be uncomfortable.  I mean I have fun doing that myself as it is, just throwing little comments here and there about you and death. (I can't lie, I would rather lighten the mood and it is fun to watch people not have any clue what to say, subconscious payback?!)  

The other thoughts I had were as I was walking with your siblings, laughing and smiling.  From the outside people would walk by and think how amazingly lucky this family is.  2 boys, and 2 girls, on a vacation for close to 2 weeks to Florida, must be nice.  To be fair, we look "perfect".  The life many would dream of.  A beautiful family basking in the Florida sun.  But we are far from perfect, and we aren't whole.  We walk around with a fake facade, pretending this is life...well it is, but it isn't...because you should be there...in your wheelchair casting the reality of what our life should still be, but isn't, and won't ever be.  It sucks.  I wear all my Sonzee jewelry, but sometimes I want a bigger sign that says "bereaved mother, buried my 4-year-old daughter in 2020". 

Anyway, yesterday we flew back to Phoenix.  In true Tzvi and ema fashion we were on the plane, deboarded from the plane, put on another plane because the first one was "no good", and after 2 hours of a delay finally were on our way.  Back to another week of reality, and a little less than a month left of work for this school year for me.  Summer organizing/packing is getting underway and hopefully, the house will be ready in 6 weeks.

Anyway baby girl!  

Have a great week! Love you! Miss you!

Until next time.

Love always, 

Ema

115 weeks

Dear Sonzee, 

Today marks 115 Mondays that have come and gone.  It is the first Monday since you left us that we are in Florida.  My memory has become so foggy, but I want to say that you were never in south Florida, I wish I could remember some of the finer details of life, but with your absence went a majority of my memory.  Unless the events were profound, the images are all blurry, and even squinting doesn't help make them more clear.  

We left for Florida close to a week ago.  I spent a few days with Elle and your siblings had fun with aba and savta.  Friday marked the beginning of our 3rd Passover without you with us.  Aunt Shuly, Uncle Russell, and Jami came over for the first seder.  At the second seder, aba's good friend came over.  

Friday night your little brother ran around like a crazy man despite my attempts to explain he was going to get hurt, and now he has a broken hand.  I feel like I have unlocked another parenting level now that all of you have had at least one broken bone before you were 10 years old.  You still win for having the most, just never cast. We were always afraid you would hurt yourself during a seizure if you had a hard cast. 

Mr. Joe and the crew continued to work hard on the house while we have been away. The new pictures he sent show almost all the drywall complete and Noam's bathroom is cemented and ready for the next steps.  We are still waiting on the garage doors to be delivered and aba's and ema's vanity came damaged, but otherwise, I feel like things are going semi smoothly.  I am just ready to be in the house already!

Anyway baby girl.  We miss you lots!

Until next time.

Love always, 

Ema

114 weeks

Dear Sonzee, 

Today is 4/11/22...it also happens to be 114 weeks which is 411 backward, and it is also a bit after 10pm, which is 22 in army time.  Maybe I am stretching reality, but it stuck out to me and it felt worth mentioning. 

Last week at grief group was the first time I said it was 113 weeks, but since no one besides me counts in weeks like me, it was 2 years 2 months, and 3 days. When I say 2 years it makes it feel so long ago, but in reality, it feels like it was actually today.  After 114 weeks I can make it through talking about you more often than not without crying, but then sitting down to write to you brings out all of my emotions and I find myself right back to the beginning of this journey. I wonder if there will ever be a week that it won't be the case, because week 114 isn't it.

I feel like nothing eventful happened this last week, except maybe that Laeya started gymnastics with a friend from school.  Since she graduated from swim the rule was she had to find another activity to participate in to be a little active. We will see how it goes. 

This week I worked a bit on the route for our drive to NY, and then I started to think that I might do a completely different drive.  Good thing I have some time to finalize the trip. 

Last week a student started to use your GoTo seat.  Mrs. Dina came to get me to show me how cute they looked sitting in it.  It makes me smile to know it is being used. I wonder if you would have finally outgrown the size one? I wonder if I would have still shared it with others had you never left?

The house continues to get closer to completion. I am ready to sort through your boxes and make your little area.  I (think) I am ready to see more of your stuff?  I stared at your pacifier clips the other day while I waited in the doorway for your siblings.  It may have moved houses, but it still hangs the exact same way.  I cannot believe how many different clips you had.  I mean I can, because obviously you needed a clip in every color, but really, you had so many.  You had just gotten so many new ones also for your birthday.  They still hang on the same string in their cases...and it has been 114 weeks. 

Anyway baby girl.  I miss you lots!  I hope you have a great week!

Love and miss you!

Until next time.

Love always, 

Ema

2 years 2 months...and 2 days (April 5, 2022)

Dear Sonzee, 

It happened.  I anticipated it would happen, but I didn't realize how soon it would occur.  Today, is April 5, 2022.  Today is 2 years 2 months and 2 days since you died.  Today is the first day I realized that the 3rd already happened. This was the first month in 2 years that the 3rd of the month was another day.  In fact, it was actually Elle's birthday.  A date that used to stand alone, but for 2 of those years I am pretty sure I didn't think of the day as hers anymore.  It was a day that meant another significant amount of time had passed without you here.  While that is still the truth, this month was the first time that it wasn't the only truth.

There is still a lump in my throat when it comes to thinking about you not being here.  There are still many moments that catch me off guard and bring me to tears in front of crowds of people.  There is still this huge empty space in my heart.  There is are still moments when I can't breathe thinking about you being gone for as much time as you have been and knowing that there will be such a significant amount of time ahead.  There is still so much pain. There is still so much anger and frustration over your life and death.  There is still panic that all of this will never end.  But, for the first time in 2 years, there is also a tiny beam of sunlight that is peaking through showing me that it is true, there is a way to merge the before, during, and after and life does actually form a new normal that isn't horrible. 

After 2 years I am actually starting to learn how to balance our life with your death (I can't lie, it isn't without help).  It sometimes feels impossible, but at the same time, it sometimes seems like it was so easy.  As I think back to how I spent the monthaversary to the day of your death compared to now, I can only compare it to how we used to celebrate your seizure-free days at the beginning of your life.  In the beginning, each seizure-free moment was honored, each hour that went by was a celebration, but the period always ended, the chalkboard was always erased, and the next period of time would start all over again. I even went through a phase where I considered just celebrating your seizures themselves because they happened more often than not.  

When you first died I couldn't leave the cemetery for hours.  I sat getting burnt and eventually Valley Fever from all of the dust that would blow.  Each month I painted you a rock to mark the date.  They were always completed in advance and I made a point to make going to the cemetery part of my day at whatever cost.  I was so afraid of going to NY in the summer of 2021 because I didn't know how I would handle not seeing you every day, but it turns out, I survived.  After I came back going to see your grave was worse than not.  I would still decorate rocks and have aba bring them to you, but the intense feeling that drew me to your grave initially started to dissipate.  I would still give a nod to the significant days that would pass, but there came a shift where I knew I didn't need to go to the cemetery for you to know I was thinking about you 24/7.  The reality of you not being there started to feel true, and having to see your name on a stone wasn't something I needed to put myself through over bereaved mom guilt. 

After 2 years 2 months and 2 days, I feel like I am starting a new part of this journey. I won't say it is acceptance because I struggle with that word and your life all the time.  To accept it in my mind means it is okay, and nothing about you having CDKL5 and dying before you turned 5 is ok. But I am at a place where I can accept that our lives without you here physically are going on, but spiritually you really are still here, always.

So happy 2 years 2 months and 2 days of freedom baby girl!!!  I hope one day to see you in my dreams.

Until next time.

Love always, 

Ema 

113 weeks and 1 day

Dear Sonzee, 

Hi baby girl!  It's been another week since you were last here.  I always feel like I cannot remember anything that happened during the previous week to recap when I finally take the time to sit down.  This last week Laeya graduated from Hubbard swim.  It is crazy that she started to swim there almost 12 years ago.  Hard to believe that now only Noam and Meena are left to swim.  Meena is now in Hammerhead seniors and Noam is still a goldfish.  He is finally getting more comfortable in the water, finally not grabbing onto his coach for dear life when he back floats.  He could have learned a thing or two from you and your waterways.

Last week I found myself going back to FBC main campus for a meeting.  It is funny, that I subconsciously take the long way if I have to go somewhere by the classrooms, and my body avoids the central hallway at all costs.  If I find myself in it for a specific reason my head refuses to turn to the left.  I am so thankful that I have these internal boundaries.  I can still picture you and Corrinne during circle time or rest time.  I think my mind is afraid to erase or replace those images, so it doesn't even allow it the opportunity.

Over shabbas we finally were able to get up to Bear Pines.  We took friends with us and it was so much fun!  Aba keeps bringing up selling it because of the insane prices houses are going for, but unfortunately for him, I am way too attached. We have local friends there who come over and the girls are obsessed with the doggies who live behind us.  Laeya spent over an hour cuddling one of their new little pups on Saturday.  The house itself is the perfect house, the feeling of calm that happens when I am there is impossible to mimic elsewhere, and the moral of the story is Bear Pines can't be sold.  

On Sunday was Elle's birthday, and Laeya went to a bat-mitzvah, it also happened to be the 3rd, which means it marked another month since you left us, but I can't lie and say I realized that, but I will explain more in another post.

Anyway baby girl!!

I miss you beyond words!

Until next time. 

Love always, 

Ema